Dialysis patients demand backup power

BUFFALO, N.Y. (WIVB) – Allen F. Scioli has been getting dialysis treatments for about five years, most recently at Southtowns Dialysis in Hamburg, which does not have backup power. He’s angered by the fact that the State of New York does not require dialysis providers to have it.

Scioli is speaking out and demanding changes when it comes to the lack of backup power at some dialysis facilities and he isn’t the least bit worried about ruffling feathers.

“I kept asking what happens if we have a power outage. You’re going to put everybody here in danger,” Scioli, a retired West Seneca police lieutenant said. “I figure who’s not going to like me? The administrators? The corporation? I could care less. People are what counts.”

How dialysis works

Kidney dialysis is a life-support treatment that uses a special machine to filter harmful wastes and excess fluids from the blood. The patient is hooked up to a machine that takes over the kidneys’ job of filtering blood.

Traumatic for patients

“It’s a very, very traumatic experience for a patient to go on dialysis,” says Dr. Brian Murray, chief medical officer at Erie County Medical Center, which operates a kidney dialysis clinic that has backup power because it’s part of the hospital.

Dr. Murray, who is also a nephrologist, a kidney care specialist, says “it’s generally not life threatening” if power goes out during dialysis and there’s no backup power source. “Generally a unit that doesn’t have a generator will have a back up facility, and will have to find an alternative arrangement or place to get that patient dialyzed.”

Dr. Murray says the procedure doesn’t necessarily need to be the same day.

If the power goes out and there’s no backup generator, the dialysis machine stops. Blood left in the tubing can be returned to the patient’s body manually using a hand crank. Patients are instructed on how to do that but some patients may not be capable and staff may not be available to assist.

“When you have bad kidney failure, one of the signs that you need dialysis is that you might be confused. You might have difficulty following instructions and so on. And particularly if a patient’s at that stage in their dialysis they might not be capable of doing that themselves, and they would have to rely on the staff in the dialysis unit to basically do the mechanical cranking,” explained Dr. Brad Truax who is a patient safety consultant and a former medical director of Erie County Medical Center.

According to the National Kidney Foundation, 26 million American adults have chronic kidney disease and millions of others are at increased risk, especially the elderly. African Americans are about three and a half times more likely to develop kidney failure than whites.

Medicare has been paying for treatment for all patients since 1973, the only program like it in the United States. What started as a trickle has ballooned to more than 400,000 patients who get regular dialysis. The cost is more than $30 billion annually; for each patient the yearly cost is nearly $88,000.

When the power went out

“I was taken to the emergency room and basically within a couple of hours they said I was in renal failure,” recalls Darryl Ashford, of the City of Tonawanda, who has been on dialysis for a couple of years.

Dialysis Clinics in WNY: Click to see locations on map

The power went out during a treatment at this U.S. Renal Care facility in the Town of Tonawanda during the December holiday period and there was no immediate backup power available. “I’m there dialyzing. I’m trying to get the toxins out my body. I’m trying to get the extra fluids off,” recalls Ashford.

He says he waited about a half-hour to 45 minutes for the power to come back on. But it never did. Having been dialyzed for only about an hour, Ashford says he was sent home. The interruption meant Ashford had to be extra vigilant about what he ate and drank until his next dialysis treatment a couple of days later.

U.S. Renal Care operates three centers in the area. None of the locations have backup power.

In response to News 4’s investigation, the company states that it did experience a power outage at the Tonawanda location on Dec. 22.

Patients were given the option to continue their treatment at another U.S. Renal or return the next day. The company says it has “contingency plans” in place in the event of a power outage and that it’s “moving forward” with plans to “install a generator” as further backup at facilities in the region.

Dr. Truax says most patients need dialysis every other day. “It’s highly individualized and one patient might deteriorate significantly and actually be in a life threatening situation in as much as one day,” he explains.

“Like a miracle”

As a former district attorney who’s prosecuted his share of cold blooded killers, not much surprises Frank Clark. “It does surprise me,” says Clark when News 4 Investigates told him that there’s no state regulation requiring backup power at dialysis facilities.

Clark gets dialysis treatments three times a week at a DaVita center in the Town of Tonawanda, which does have a backup generator. He says the procedure is “like a miracle.”

“I thank God everyday for that dialysis machine because that keeps me alive,” says Clark. “If the power goes out. The machines go down, and the process stops. And as we know, it is a life giving procedure.”

About 80 patients a day are treated at the Comprehensive Dialysis Center of Western New York in Williamsville. In business for 20 years, the facility does have a permanent backup generator in the event of a power outage.

“Every time we use it we keep saying, ‘I’m so glad we have it,’ because it really is a lifesaver,” says Gail Hamm, administrator.

She says the backup generator really came in handy during the October 2006 ice storm that resulted in widespread power outage. “As soon as it senses that we have no power it immediately kicks in. And so it will service us 24/7. And we almost needed that during that week of the October storm.”

“I don’t have anything to compare it with. But it would only seem logical that it would really be very disruptive,” Hamm said about running a facility without backup power.

The clinic is owned by two kidney care specialist physicians, Romesh Kohli and Inkee Min.

There are at least 11 states across the country that require backup power at dialysis facilities.

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Michigan State Representative Marcia Hovey-Wright wants to add Michigan to that group. She introduced a bill that just sat in committee because of concerns about the cost to providers.

Hovey-Wright tells News 4 Investigates that she will resubmit the proposal with added language allowing for mobile generators to be hooked up within 12 hours if there’s no permanent generator in place.

“It just seems to me that this is a cost of doing business, is to have it available when people need it,” she says. “Safety factors are part of doing business.”

“This is a common sense issue,” he added. “Government’s role really and provider’s role in keeping the system safe is to prepare for certainties that we know are going to happen.”

Spotlight on emergency preparedness

The issue of emergency preparedness has received a lot of attention in recent years especially following Hurricane Katrina and Superstorm Sandy, weather disasters that put a spotlight on the dangers of power loss.

“There’s been more and more a recognition that emergency preparedness needs to be woven through the legal structure,” says Daniel Orenstein, deputy director for the Network for Public Health Law.

Governor Andrew Cuomo convened two commissions in 2012 to address the challenges of preparedness and response in the wake of Superstorm Sandy, which especially slammed the New York City area and Northern New Jersey. According to a progress report released in the fall, the joint commissions recommended the state ensure that key healthcare facilities “in vulnerable locations” have backup power capacity, “including at least dialysis facilities and adult care facilities.”

Federal Centers for Medicare & Medicaid Services are reviewing a new rule on emergency preparedness that does not require backup power but proposes that providers work with other companies or hospitals to make sure patients are treated.

New York State’s health code does not require backup power but expects companies to provide ways for dialysis patients to get treatment if there is a power loss.

“If I look at it from the standpoint of a patient I would be very reluctant to get dialysis in a place that did not have a backup system in place,” observes Dr. Truax, the patient safety consultant.

DaVita, largest operator in WNY

Western New York has 20 dialysis facilities but five are located in hospitals which are required to have backup power. Of the 15 freestanding dialysis clinics, nine have backup power.

DaVita, the second largest dialysis provider in the country, operates the highest number of facilities in Western New York. Of DaVita’s seven facilities in the area, four have backup power, including one in Niagara Falls which is located in a hospital building.

DaVita’s emergency response team manager says portable generators are strategically located across the nation. In an emergency, the unit can be moved into position so it can be ready to provide power. The closest backup unit to Western New York can be found in Ohio.

“If it’s determined that it’s going to be a long term outage, we can have the portable generators brought over to the facility and hooked up and have power restored,” says Tom Bradsell, manager, DaVita Village Emergency Response Team (DaVERT) DaVita HealthCare Partners, Inc. “We do have very clear guidelines for facilities. We are prepared for emergencies as they occur.”

Bradsell says generally power can be restored within 24 hours. He says the company will work with other dialysis providers in the area to make sure treatment is not delayed any longer than necessary.

The State Department of Health declined our request for an interview. But in a statement, a spokesman says that the health department works to ensure dialysis “facilities are prepared” and have “contingency plans in place” in the event of an emergency.

The spokesman says the state works closely with providers “to assure they are equipped to withstand an emergency event” and can get patients to dialysis.

Backup power law proposed in NYS

“If you need to have dialysis you need to know this is not going to shut down while you’re midstream,” says Assemblywoman Crystal Peoples-Stokes, a Buffalo Democrat who sits on the Assembly’s Health Committee.

Peoples-Stokes says she was surprised to learn from News 4 Investigates that there’s no health department requirement for backup power for dialysis. “I just thought it just seemed like such a no-brainer in many ways,” she said.

A bill requiring backup power in dialysis clinics was introduced on Wednesday with co-sponsor, Nassau County Republican Sen. Kemp Hannon, Health Committee chair.

Even one clinic without backup power “is too many,” Peoples-Stokes says. “I think everyone should have some opportunity for backup.”

Darryl Ashford, a dialysis patient, looks forward to a time when generators are required. “I’m hoping at some point quick, soon, that generators are secured for all these facilities in the area who don’t have generators for their patients because it’s necessary,” he says.

Two companies dominate dialysis business

Nearly two-thirds of all dialysis patients nationwide are treated in clinics owned by two companies: DaVita and Fresenius Medical Care. The biggest dialysis provider in the nation, Fresenius, analyzed the needs in Western New York and decided to put backup power generators at its three local clinics. But the company’s director of global disaster planning tells News 4 Investigates that requiring permanent generators at every location is unnecessary.

“I think the focus should be on, are the patients getting good care, are the patients getting reliable care after a disaster? After an emergency? Physically having a generator in your facility does not guarantee that,” says Babajide Salako, director of operations support and global disaster planning for Fresenius Medical Care.

New Jersey requires backup power but that didn’t help patients when Superstorm Sandy swamped clinics and made backup generators unusable, he adds. A major problem in that situation was transporting patients and staff to clinics with power.

As someone who sits in the dialysis chair three times a week, up to four hours at a time, Allen Scioli says the state should have acted a long time ago, “I feel the Department of Health has fallen down in their responsibilities to the patients, which is a major disgrace, I think.”